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The Deathtalker’s message to aged care

Death is often dealt with poorly in aged care even though most residents know they won't be going anywhere else, Molly Carlile tells Megan Stoyles.

Aged care staff must work out what they think about their own death, and dying generally, before they can be trained to provide effective palliative care, says noted palliative care nurse and author Molly Carlile.

This is a woman who knows a thing or two about death.

Carlile, the self described Deathtalker was, until recently, manager of the largest metropolitan palliative care consortium in Victoria. She is now manager of palliative care services at Austin Health and sits on a number of departmental advisory committees.

She regularly speaks about death and dying issues in the community, the media, and in the health and education sectors. She has written books for children about dying and grief, and collaborated with Australian playwright, Alan Hopgood on "Four Funerals in One Day, the play about palliative care.

Their latest play, The Empty Chair, which starts touring in September, deals with grief and dementia.

"I got into the 'death business' as a nurse when I was looking after people who were dying and their families," she says.

"It made me realise that, as a community, we don't do death well. We need to invest time and energy in front end, in health and promotion. If it's done before, we're not so scared of death when it happens. But the fear won't change until community attitudes change."

Carlile has worked in residential aged care, as a nurse, but more recently and more often as a trainer and educator of residential facility staff. She also talks to families with relatives in facilities about grief and loss and end of life care.

"Death is often dealt with poorly in aged care even though most residents know they won't be going anywhere else. When someone does die, staff don't talk about it even though the other residents notice that a resident's not there anymore. It's like one day, they're just gone."

However, she acknowledges that some facilities are doing it a lot better now, with open conversations about someone who is dying, and rituals around death involving family, staff and other residents. However, that process depends on the person in charge; it's not a general practice, she says.

"Staff have to be able to deal with their own attitudes to death first. They may have chosen to work in aged care for a reason, but it's not normally because of the palliative care aspect.

"Aged care workers need to have ongoing professional development in palliative care, focusing on how to provide best practice end of life care, and they should be encouraged to explore their own views of mortality. Aged care is not about cures like acute care; it should be about making the best of what people have got and providing a level of care that's comfortable for them," she says.

Staff must make death and palliative care part of their work process. They have to be aware of family attitudes and ideally be able to tell them that death is likely to occur and when, not cover it up with euphemisms like 'mum is a bit quiet', she says.

Carlile says that all aged care training needs to include palliative care but currently "it's piecemeal, with a bit in Certificate IV but little in lower courses". It's the same for nursing; there is little standardised undergraduate training or ongoing professional education in palliative care occurring, she says.

"Training has to include palliative care education not just for resident care but also for carers. Compared to acute care, where you might just see a dying patient for one shift, in residential aged care you look after them every day, often for quite a while, so when they die there is an element of grief for professional carers."

Training must also take into account the culture of the resident and the culture of the carer, so that the professional carer is aware of their own attitudes to the care they provide. People's resilience should be strengthened, so they know they're not alone in dealing with the death of a resident. They are a person first and aged care worker second. If you're not dealing with who you are you won't last, she says.

"Residential aged care providers have to ensure palliative care training and ongoing review occurs in their facilities. Advance care planning has to be discussed on admission to residential care with the resident and family, so that palliative care is there as an option and that it is provided instead of unnecessary, unwanted and painful emergency treatment or aggressive treatment such as peg feeding, when that's not appropriate for that person."

Carlile says that palliative care guidelines for residential aged care are available* but that many facilities don't know they exist, or if they have them, often they are "just sitting on a shelf and not being used".

She also urges facilities to seek out and use their local specialist community palliative care services, as part of a team approach.

"Many of the symptoms facility staff see in residents can be alleviated by a palliative care approach. Pain is not the only the precursor to palliative care. Breathlessness can be assisted by appropriate medication. If specialist palliative care is accessed before a person is actually dying, symptoms can be managed better, earlier, and care plans can be revised as required."

Medication for palliative care in residential care is a major issue, especially given the shortage of registered nurses in aged care, especially for low care facilities and residents.

She believes there is an inherent fear in many facilities, even with nurses available to administer opioids, of using strong medication for pain and symptom management, and many residents who should be on morphine to manage their symptoms don't have access to it.

Carlile supports the call for the Productivity Commission report to build palliative care into the ACFI funding model, as well as advance care planning, so staff know what residents want. This will help avoid inappropriate trips to the, emergency department of acute hospitals or if necessary can guide decision making in an emergency.

"All of our actions should be based on the World Health Organisation principle that we do not artificially prolong life or hasten death," she says. n

The Guidelines for a Palliative Approach in Residential Aged Care are evidence-base guidelines developed by the Australian Palliative Residential Aged Care (APRAC) project team. Go to www.nhmrc.gov.au/publications/synopses/ac12to14syn.htm. More on Carlile at www.deathtalker.com

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